Tangled Up In Blue, Blue Flowers on a patio.

Pain Is Lonely

I have been lonely many times in my life. High school was very lonely. I surrounded myself with as many people as I could, never sticking to one group. I zipped from one group to the next like a hummingbird, making sure that I could sip the nectar from as wide a population as possible. I did almost the same in college. I made a few friends, but I never established roots that took hold. I changed dorms often and had some pretty wicked fights, and tempestuous relationships.

When I married the first time, I married into my husband’s friends.

By the time I married the second time, my personal and professional life were so intertwined that it was natural for me to marry someone I found through work.

This makes for a special brand of loneliness. A way of conveniently never getting close enough to anyone to ever get hurt by them. But, this form of friendship making comes with its own pain. These are the kinds of friends you never have trouble having a weekday lunch with, or inviting to a large party at your home, but what happens when you need a friend on a day off? Who do you go to when the pain hits?

Pain can make us feel like a forlorn Shih Tzu cuddling with a toy frog.When my pain hit there was no one quite close enough to really turn to.

I had my Monday through Friday friends and don’t get me wrong; they were and have been fantastic. The problem isn’t on their end. The problem is on my end. Having never gone past the “work friend” relationship with most of them, I never did the mutual give and take of real, hardcore sharing that a friendship requires. So, when the pain hit, and I started talking (talking a lot). I imagine there were a lot of bewildered faces, wondering “Why is she telling me this? Doesn’t she have someone in her life to share this with?”

No, no I didn’t.

On top of that, the real subject of my keyboard tapping today; pain, in and of, itself is a very lonely place.

Pain is deeply personal for each person that experiences it. We all hurt in different ways, in different places, different strengths, and for different periods of time. All of us in chronic pain share something, yet we all have surprisingly unique tales to tell.

This is my tale of pain, this is my tale of loneliness.

My pain did not hit suddenly. I am one of those people that never felt “right”. I was always full of complaints, much to the chagrin of my family. My stamina was never in line with my age. My body was old before its time.

When the great pain of illness struck it was just another thing, another step on the road of me feeling crappy. Only this time it was a bigger step, the step I think I was always waiting for, the one I knew was always coming. When I woke up one morning sicker than I had ever felt, I did not know that THIS was the day, that THIS was the moment. All I knew was that I felt really bad, and I had to do something about it.

The long and short of it is this: from an initial diagnosis of the swine flu, then on to mono, resulting in anaphylactic shock from the Z-pack they put me on, peppered with hives and a tongue blocking my airway and a lymph gland the size of a softball under my right ear. I was entering a new world, a world that no one including myself really understood; and with all of this strangeness, these misdiagnoses and poor reaction to  my medication, the result was feeling very alone.

How do you explain what you really don’t understand?

“Where does it hurt?” EVERYWHERE?

“Why does it hurt?” I DON’T KNOW.

Even the wonderful: “What can I do to help?” Sorry, there isn’t really anything you can do to help. Sometimes I would, and still do reply “Just shoot me!”

Just shoot me. Now that isn’t really a productive answer from me is it? But seriously, sometimes that is the best description of how at the end of my rope I can feel. There is no answer to how cornered and hopeless I feel in this pain. And how can someone help a person that can’t always help themselves? It’s, admittedly, a really bad situation for everyone concerned. Here I am lamenting being alone, with no way to tell anyone how to help me feel any less lonely.

That is the rub.

When someone wants to help me, first they want to be able to empathize with me, they want to understand what is going on. With the great mystery of chronic pain that is a challenge.

Last night, for example, I woke up with neuropathic pain in my feet, shoulders, and hands. The pain was a searing, shooting, incomprehensible agony that I can’t characterize with a number on a scale. So, I took a pill, tried to have a snack (pain makes me less than hungry), and sat in the dark, staring at the moon.

Now that sure paints a dramatic picture. The exact kind of drama I don’t want to create, but the thing that we pain patients get known for.

In the dark, staring at the moon, wishing for a moment”s peace from this crap. My dogs know where it hurts, and try to lick those pain spots. That hurts even worse. That is so sad for me, even the gentle kisses of my precious pups hurt like hell.

Probably the thing that hurts the most is having a total lack of understanding from those around me that I would hope would be the most understanding of all. To have someone who is close to me outright refuse to take any steps to get close to my pain, to explore how it makes me feel. You see, I have taken steps to explore, realize, and acknowledge that my pain is a real pain in the ass to the people around me. My family, my close friends, my clients, and employers have suffered for my illness. Being around my shit is shitty. I give them that, I give it to them in spades, and I am sorry as I can be.

My loneliness is built into my condition, I don’t expect anyone to save the day, or to fill every gap that pain creates. Do I have expectations? Damn straight I do. Don’t make me feel bad for feeling bad, I didn’t ask for this. Don’t leave me alone in my lonely pain. It’s hard enough to feel a way that I can’t explain to you, don’t alienate me for being alienated.

Don’t tell me “You’ve changed since you got sick!” Um, ya think? A blue rose on weathered wood.

How do you think I feel when you say, “When people ask you how you are doing, they really don’t want to know!”?

Could it really be true when you say, “People just don’t like you anymore.”?

And finally, does someone who wants to help you through your pain ask how you are feeling before or after they accuse you of taking too many pain meds in a given period of time, and tell you that you should not, under any circumstances tell anyone the degree of pain management you have had to seek to control your agony?

If this is my life, how am I not alone? If this is my life how do I not seek to change it? If this is my life, how do I go about making it not my life?

Shut out, shut down. That is what I have done. I have totally closed off from those who have chosen, for whatever reason, to not face this lonely time with me. In some ways it has been easier to find a less lonely place deep inside of myself, in my writing, in taking pictures of food I cook and flowers in my yard, then to stare into the face of someone that could not even tell me the simplest symptoms of any of my chronic illnesses except “you have pain”.

Accept my treatment (or help me find better!). I have learned to accept that I am being managed, not cured. That very idea is, while frightening, something I have had to accept. The only bad kind of hope is false hope. I don’t need to wake up every day wishing for something that will never happen. My energy is better spent fighting for the good instead of wishing for the impossible. If someone wants to help me in that fight, my car has plenty of passenger seats. If someone sees the options as “get cured, or get gone” then I am gone.

I am not perfect. I don’t want to be perfect. I am a human that does human stuff. Not everything I do is always going to be the perfect model of health, or fit in with what everyone in my life thinks is what is best for me, but not everyone is me. Not everyone lives in this totally wrecked body, day-in, and day-out. I do, I know what it feels like. I am the one that wakes to sit alone in the middle of the night staring at the moon, or the ceiling, or the pages of a book that I can’t get the mental focus together to read more than a few paragraphs. I am going to seek comfort and solace where, and when I can. Deal with it.

Want to enjoy life with me, just put your seat belt on. The car doesn’t go fast, but the ride can get bumpy.

 

 

 

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